[Fiona]

Bless you all for your incredible energy and good will in this discussion. I haven't said anything because I think that what we need to do is incredibly confrontational and political. Like Sheryl said, we don't have time. It's not only running out for us but for our society, and what our med system has become is shameful. So I'm of the mind that we demand what's fair and just, and not worry about hurting anyone's feelings. So I'm kind of an extremist, I suppose, and not so good right now with the concrete suggestions and civil discussion. But I wanted to say hello and thank you all for keeping the faith and fighting the good fight.

[Perryc]

Originally Posted by indigogo

I think we need some sort of clarification.

Are we building a scientific database or an advocacy network?

I had been assuming the latter.

I would say both. The advocacy list comes first. Jean has already set up the basic infra-structure. This is a simple and very effective 1st step. I want to be clear that my preference for collaboration with the PD orgs, does not mean any opposition to a unified patient voice. In fact I had sent out an email prior to the start of this thread voicing concern that the overlapping advisory boards would become more loyal to their home organization than to the interests of PWP, and reinforce the existing structure of PD organizations, which by the way is far more coordinated than when I began in this business 12 years ago, but still leaves important gaps in research and services to PWP in the USA. Bringing attention to and addressing these gaps would be the goal of the PWP advocate network.

The patient data base is my extension and expansion of the first step to a broader necessary step for improving therapeutics development and patient centered health care. This goal will benefit from the success of first step and will build on it to further empower PWP. the second goal takes some resources, which we are still expecting from a non-medical corporate foundation grant (the funding has been delayed again sorry to say, but each delay of the half dozen changes and delays, so far has resulted in a stronger more sustainable proposal). I cant say any more here, but there are a number of encouraging initiatives that I could use help on. This is where the volunteer approach is weakest (getting help for tasks that require special talents).

Perry

[Jaye]

I have a practical streak a mile wide......and I hope (just my two-cents view) that we can find a place to keep this database that is not under any one individual's control. Not under a previously established website, not on someone's server at work, not subject to the squabbles and fiefdoms that just seem to happen when everyone's meds wear off at the same time. It could happen that the database could be hoarded during someone's "i quit" phase or squandered on someone's "training" and "oops"ing, or even nonexistent due to someone's embarassment at not really knowing how to set it up. These are just some possibilities I thought up from moments of trepidation in the past when I was more afraid of more things than I am now, but maybe we could be just a teeny bit afraid of them. [Edited to add: I have clearly stated that these are my fears. I have only had ten years to be involved in the Parkinson's community; prior to that I had many other volunteer experiences and witnessed many amazing interactions. I have also watched an entire virtual community disappear out from under me. I thought caution was in order.]

I hope I'm not seeing a rush to get down to too many details before we're ready, although it does seem like time to get on with it. When the group in Atlanta returns seems like a good time to me. I think we need to acclaim some leaders, to avoid duplication of effort and working at cross-purposes as much as possible.

Oh I forgot to say that the idea of an all-patient database, which Tom brought out in his remarks, seems to have won by acclamation. Is that the "sense of the meeting"? (Quaker expression)

New idea
Quakers make their business decisions on the basis of consensus. A Meeting for Business goes on until everyone agrees on any action to be taken. This can take forever. But maybe some of you more astute (or trained in the law) folks can help figure out how we could approach that model, while still having someone(s) in harness at the front of the team, or sitting at the top o some heap of responsibility.

"From those to whom much has been given, much will be expected." - someplace in the Bible.

Jaye

[DocJohn]

Not to intrude in your thread, but I just wanted to say that if you need any server resources (e.g., a place to host this thing, mailing list software, whatever) or seed funding to get this thing going, I'm happy to pitch in and contribute.

I think that very few national advocacy organizations "get" the e-patient movement, and this thread is a prime example of the power of the people! So anything you need, just let me know...

John

[indigogo]

Doc John - what an amazing offer! I'm sure we'll be in touch! Thank you!

[SherylJ]

Originally Posted by indigogo

I think we need some sort of clarification.

Are we building a scientific database or an advocacy network?

I had been assuming the latter.

Carey, I, too, am operating under the assumption that we would be creating an advocacy network, not a scientific or medical database. I have many concerns about the latter, not the least of which is that success demands that we capitalize on our strengths and not try to be everything to everybody. If I have learned just one thing working on various PD initiatives, it is that our failure to finish projects or meet our goals in a timely manner is due to one of several factors:
1. We have bitten off more than we can chew, instead of keeping our goal(s) simple. In the case of a scientific database, convincing people to post personal health info would be a hard sell and we'd probably have HIPPA constraints and/or other legal handcuffs to deal with. We'd need experts in what questions to ask to elicit useful data and to analyze this. Getting enough responses to make data meaningful would require a long time.
2. We chose to do things that required monetary resources, skills, and knowledge that we do not have.
3. We depended too much on help from the orgs, ignoring the fact that they have a different set of priorities and urgency than we do, are beholden to an extent to those whose toes we may be stepping on, and don't want to risk their reputation on something that is not a sure thing.

As patients and patient advocates, we can speak to what we need as no one else can. We need a new game plan. Perhaps it's time to take off our orthopedic shoes, bang them on the podium, and demand seats at the table when decisions affecting us are being discussed. If the seats must be bought or rented, we will come equipped with the chairs in a bag, which are light enough to carry ourselves.


sheryl

[jeanb]

[paula_w]

I second Carey - what a generous offer and a much needed one.

Thanks Doc John...perfect.

paula

Originally Posted by DocJohn

Not to intrude in your thread, but I just wanted to say that if you need any server resources (e.g., a place to host this thing, mailing list software, whatever) or seed funding to get this thing going, I'm happy to pitch in and contribute.

I think that very few national advocacy organizations "get" the e-patient movement, and this thread is a prime example of the power of the people! So anything you need, just let me know...

John

[jeanb]

I have visited there but never found a reason to stay. I regard the site as "fluff." I know Carolyn has tried to bring up the level of discussion about treatments, PD in the news, etc. But people there aren't interested.

I see it as a chatty place for the newly diagnosed - and not a place for advocates.

I'm surprised it has been received by the media with such acclaim. It's style without substance.

[SherylJ]

[QUOTE=Jaye;341496]I have a practical streak a mile wide......and I hope (just my two-cents view) that we can find a place to keep this database that is not under any one individual's control. Not under a previously established website, not on someone's server at work, not subject to the squabbles and fiefdoms that just seem to happen when everyone's meds wear off at the same time. It could happen that the database could be hoarded during someone's "i quit" phase or squandered on someone's "training" and "oops"ing, or even nonexistent due to someone's embarassment at not really knowing how to set it up.

Jaye, I understand your fears, but I just would like to point out that my husband created, supported, and continues to host the PPP treatment database FREE OF CHARGE for the last two years as his ongoing gift to the Parkinson's patient community, this even though I am no longer an official member of the PPP.

We have to be realistic about any database that is created. If we have someone who makes their living designing databases and is willing to donate their time and expertise, why on earth wouldn't we want them to do it? A committee can be in charge of deciding what goes into the database, but obviously only a couple of people can be responsible for making changes, additions, and deletions. The integrity of the database demands limited access. Does this mean the two administrators "control" the database in some pejorative way... I don't think so.

If the patients committing their time and effort to this initiative can't trust each other, we're doomed to fail before we begin. Our futures are entwined... we seek or swim as one and the sooner we recognize this the better.

sheryl